Haley Pinciotti

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Visit 9

Visit 9 was a quick one! Luca had only one appointment and we were home in just under 48 hours. Luca has officially been in active treatment for 2 years! Time sure does fly when you’re flying across the country over and over again, crushing nuts, separating eggs, and boiling milk! Luca has grown up so much in the last 2 years and I am just so proud of how far he has come.

At this appointment Luca escalated cashew and peanut and challenged uncooked cows milk. He ate each food and then exercised for 5 minutes after to raise his heart rate and ensure it didn’t cause an allergic reaction. Thankfully, Luca passed each one! He will continue to treat cashew and peanut in escalating amounts at home for this next cycle.

During this visit, Luca officially cleared cross-contact for peanut! This is a huge step and one I am so thankful we have met now that Luca is in kindergarten. It’s a huge peace of mind knowing how much safer he is now.

This was the last step for treating Luca’s milk allergy!!! Of course, as with most foods treated in TIP, passing a food challenge is really just the first step of freedom. One month from passing his milk challenge we will be able to uncap dairy, meaning Luca will be able to eat unlimited amounts of milk, yogurt, and even ice cream! At that point we will also be able to begin introducing soft cheeses like mozzarella and feta. Three months from passing his challenge is when we can introduce harder cheeses like cheddar and parmesan. This is because the protein concentration differs in different dairy products and cheeses. And of course, as long as milk and yogurt continue to be a part of his daily maintenance, he cannot consume any dairy within 4 hours of his treatment foods (peanut and cashew). The real true freedom comes when the maintenance foods drop to once a week. Then he will be able to consume any amount or type of dairy whenever he wants. 

Speaking of maintenance, Luca has been really struggling with his egg maintenance. Luca has had to consume 1 whole egg 3x per week to maintain the tolerance he has achieved in the program. Luca hates eggs though, and it has been a struggle getting him to eat all of his maintenance by the time we have to leave for school. We recently got the okay for his egg maintenance to drop to once a week. Almost half of his weekly nuts and seeds also dropped to a bi-weekly schedule and this has honestly been life-changing! I am so happy to be able to send him off to school each morning after eating a breakfast he actually likes. Now that egg has dropped to once weekly, this also means that Luca can consume any egg products anytime he wants! We don’t ever have to use applesauce as an egg substitute in baking anymore. Luca was finally able to try my Mimi’s “famous” homemade egg noodles, and I actually bought REGULAR mayonnaise at the store last week!

Another thing I never thought I would have on my grocery list? Peanuts. Like an actual jar of Planters Honey Roasted peanuts. Luca’s microscopic peanut doses have been mixed in a gummy up until this visit, when he transitioned to actual peanuts. So now every day I hand my peanut-allergic 5 year old an ACTUAL PEANUT to eat. Mind blowing. Luca will work up to 6.5 peanuts over this 15 week cycle.

After Luca’s appointment we got coffee and took Luca to his favorite toy store. We got In-N-Out for lunch and then explored a new beach! The pictures don’t even do it justice, it was gorgeous! After spending hours playing in the sand, finding seashells, and splashing in the ocean, we stopped at Noble Bird for dinner. Noble Bird is completely free of dairy, peanuts, and tree nuts. Because of this, and how far Luca has gotten with his other allergies (egg and soy), we were able to tell the restaurant staff that they didn’t need to take any special precautions preparing his food. Luca was able to order anything he wanted off the menu… something he has never done before. 

Passing his milk challenge and clearing cross contamination for peanut opens up so many doors for Luca. I cant wait to take him to Chick-fil-A, order pizza for dinner, and watch him try ice cream, doughnuts, and allllll the chocolatey candy. Because for a really long time, I thought he may never get to do these things. It’s exciting, nerve wracking, and surreal all at the same time and it’s hard to fathom just how much life is going to change.

Slowly but surely we are getting little tastes of freedom and what life will be like in the very near future. But the best part? Knowing how much safer Luca is now than he was even just a few months ago. Every little win we get along the way heals a part of me that has lived in fear for so long. One thing I’ve quickly realized - this is not only life-changing for Luca, but it is slowly changing the lives of our whole family.